Thankful Thursday - Small Graces

My Thankful Thursday this week is not going to be in traditional list form. I hope that Sonya at Truth for the Journey will let me slide! I'm pretty sure I'll get at least five things..

Today, I'm especially grateful for small graces. I know that I am a daughter of the King of Kings and that God loves me but occasionally, especially when I'm hurting, I need to be reminded.

I am grateful that Tatyana's heart cath went well. She was feeling a teeny bit better and ate a bit of dinner tonight. I am grateful that God gave me the opportunity to be there and sit with Chantelle this morning. While I was there, JT, Tatyana's dad, bought me a Pepsi. He didn't have to and it was a small thing for which I am grateful.

At the hospital, I had the opportunity to check-in and visit with the nurses and other staff whom we met while on Seth's journey. I'm always blessed by the hugs and warm smiles we get when up on the floor. It's a small grace that often feels larger!

Upon leaving the hospital today, I had no money for parking and the ATM was broken. I was given some parking validation stickers but the parking attendant said they were not valid. In the middle of explaining our situation to the parking attendant, rummaging through my purse, I DID find $5 and the parking attendant just waved me through anyway. (Yes, I told her I'd found the money to pay). It was a small grace.

I took the kids up to our local library this evening. I spent 45 minutes looking for our library cards before I gave up and decided we'd ask for replacements. The librarian was concerned that if they were JUST misplaced, we would waste the $2 replacement fee (per card). I told her that I was sure they WERE just misplaced. (I changed out wallets shortly after Seth went to Heaven and can't find the old one right now). But, I said, we lost a child in October and there's a good chance I'll never find them among the piles of stuff. I did NOT tell her for sympathy. It's just the truth of our situation. She waived the fees. Another small grace.

And finally, there's this:



Someone left a balloon at Seth's marker on Memorial Day. It wasn't us. I just tonight found out who it was. Remember Mary and baby N? The baby they lost is at the same cemetery as Seth and her family left the balloon.. A small grace. "Mary" sent me a note tonight, letting me know it was them, and saying that their family grieves with us. I know that to be true and I'm VERY grateful for her presence in my life.

And I think now is a good time to share. "Baby N"? The N stands for Nehemiah which means God's comfort. I am SO thankful for God's COMFORT!

Walk With Me Wednesday - Prayers

I'm not going to go into huge detail.. I don't want to embarrass anybody. But today I'm remembering a day ago last July. I met a friend, Chantelle, on the Internet. We had connected via an HLHS email loop and her family was in Spokane. They were new to the area, having just moved in October. Chantelle shared that her daughter Tatyana was having her Fontan (the 3rd HLHS surgery) at Sacred Heart Children's. I emailed asking, if all went well, if we could come up and meet them. (As it happens, we had a cardiologist appointment at the hospital two days after Taty's surgery.. which given how OFTEN we saw the cardiologist is NOT a huge surprise). When I got up there that first day, Chantelle wasn't there. I left a note. I'm pretty sure I missed her the second time too. But as they say, 3r time's a charm and it's a MEMORY! I probably won't forget even without recording it here...

At that point, Tatyana was having some complications. I can't remember the details but she still had chest tubes, they were worried about chyle thorax, etc. Chantelle had come in and for various legitimate circumstances, her "mama bear" was in full mode that morning. Having JUST met Chantelle (mere minutes, seconds maybe!), I got to witness, as she herself puts it, her "head spinning like Medusa". :) I could tell that she was just a mom who wanted the BEST for her child, like we all do. I was grateful I had left Seth at home with his dad and I was able to busy myself playing with baby London! But you know, I LOVE Chantelle. She's been a great friend and I'm blessed to have her in my life. And her family needs our prayers.

Tatyana, as I previously mentioned, has protein losing enteropathy. She's having a heart cath today. Chantelle took her in and had her admitted to PICU yesterday as she was incredibly weak and not eating. PLEASE pray for wisdom & discernment for the doctors, for wisdom & discernment for JT & Chantelle as they oversee their daughter's medical care. I got to talk to Chantelle for a bit last night and was DELIGHTED to hear how well she was doing emotionally. She was experiencing peace that she couldn't explain.. Please pray for that to continue and for their family to draw close to God during this difficult time.

Thanks, friends!

Because I can't resist sharing this cute picture of Seth - from that time frame (last July) - Seth and Tatyana's baby sister, London



One of my FAVORITE pics of Tatyana from her hospital stay last July

Praying for Tatyana

Look at this ADORABLE face!

Thank you for the prayers already prayed after my brief shout out earlier.

Tatyana went home from the hospital yesterday (Monday) evening. Her mom can manage meds at home and it's easier for a family, with an older and younger sister to take care of, as well as patient, to be together under one roof.

Chantelle posted an update on Tatyana's care page and gave me permission to re-post it here:

As some of you may know Tatyana was admitted to the hospital Saturday
because she was diagnosed with Pneumonia. After hours of test they were also
able to come to a conclusion on what is causing her swelling that has
progressively gotten worse since March. The good part for now is she came home
today and she had what is actually called Human Parainfluenza Virus type 3 which is often associated with bronchiolitis and pneumonia.( and yes it was sent to be
tested for Swine Flu results were neg.) The hard part is she has something
called Protien Losing Enteropathy or known as PLE.

What is Protein-Losing Enteropathy?
As the number of survivors after the Fontan operation have increased, an unusual and inexplicable ailment called "protein-losing enteropathy" or PLE, has been noted to occur in some children within a few weeks after the Fontan operation, or years later, in children who are otherwise doing well from a cardiovascular standpoint. Symptoms of this ailment may include swelling of the abdomen, shin and ankle area, and a change in bowel habits with the development of diarrhea and abdominal discomfort
Children with PLE lose protein molecules from the blood serum into the intestinal tract. Over time, the concentration of serum protein in the blood stream can be significantly depleted. One consequence of a low concentration of serum protein is the inability to maintain fluid within the vascular space. Low serum protein
levels can result in the accumulation of fluid outside of the normal vascular
spaces and in the abdomen, ankles and shins. An abdominal fluid collection is
called "ascites", and fluid in other tissues is generally referred to as
"edema."
The loss of protein into the stool results in a change in bowel
habits with the development of diarrhea and abdominal discomfort. Edema of the
intestinal walls may result in poor absorption of food which promotes further
worsening of the diarrhea. Another consequence of intestinal protein loss is the
depletion of serum immunoglobulins which fight off infection. Patients with
severe PLE are therefore at risk for serious infections at a time when the body
is already weakened by other symptoms related to edema and ascitesPLE after
Fontan operation is a puzzling disease.

At the moment, treatment options are limited, but include:
1) general symptomatic relief by using diuretics and changes in diet
2) treatment at the intestinal level with steroids or heparin infusion
3) treatment at the cardiac level by improving hemodynamics either with medicine (captopril, enalapril), or with a fenestration or a heart transplant.
Still unknown is the precise mechanism of this disease and why it
afflicts some children and not others. Further research into the cause of PLE is
needed. Once the cause is better understood, more effective treatment options
may then be used for this troublesome illness.

~ I know this is a lot of reading but it seemed like the best way to explain it. ( was to copy and paste?)
I just hope and pray that she will make it through this. She is a strong little
girl. I just want her to be happy and play and not feel sick.

I believe they are currently managing Tatyana with medications. PLEASE be praying for this family! I know Chantelle is worried, who wouldn't be? Please pray for God to give her peace in the midst of this trouble time. Thank you, friends!

Happy Mother's Kathryn Day 2009

Today was a gentle day. My favorite part, outside of the things God did as described in the post below, was the sweet gifts from my children.

Sean and Cary both made "presents" in school, using their thumbs! Sean's is the pink one, Cary's is purple..

In addition to that, they both gave me handmade cards. Sean's said "Happy Mother's Day" on the front. The inside said "because of all your hard work and dedication, you deserve a Happy Kathryn Day!" Do you love it??

Cary's gift included a letter. I'm writing it as he did, my corrections (so YOU can tell what it says) are in parentheses.

Der mom yor ies (eyes) are the leetblue (light blue) and you are cyut (cute) as Seth are the bast (best) mom in the wold I like you the wae you are

The best part? I mean besides the fact that I'm as cute as Seth.. After Cary read it to me, he burst into tears. Because he was just so happy!

A sweet, gentle day. My heart ached for Seth but was blessed by the presence (and presents, tee hee) of Sean and Cary. Thank you God for our family!

I do want to end this with an important request: I just found out that my dear friend, Chantelle's sweet daughter Tatyana is in the PICU. Taty has HLHS, as Seth did. She has had all 3 surgeries but is having some pretty serious compications currently - flu, pneumonia, protein losing enteropathy (PLE). Chantelle was a HUGE blessing to me when we were in the hospital with Seth, coming and spending some time just helping out with my "big boys". I have SO enjoyed her friendship and my heart hurts for her as I KNOW how much her mama heart is hurting. PLEASE pray for them!

August 22, 2008

Seth seems to be fine.. He's a tad bit bluer over all.. Dr. Carl said "*I* caused that" by ballooning the aorta during the cath.. Seth isn't fighting the nasal cannula AT ALL so that's a positive at least.. I"ve given him some tylenol today (just one dose so far), he's sleeping a lot but he does seem okay.. I wish I could just sit and hold him all day but of course, that's not happening...

We do have a sat monitor. It's just a little hand held one. We actually took it up to the hospital yesterday and had him on both ours & theirs for awhile.. That increased my confidence in bringing him home! He's satting higher on the o2 (like high 80s) but still seems pretty fatigued..

August 21, 2008

We got discharged late this afternoon (around 4). Seth is home, on oxygen (just a nasal cannula - the kind that goes in his nostrils). All in all, he's doing well. Still a bit uncomfortable but Tylenol takes care of that. He's doing okay with his feeds (through the feeding tube) and with the oxygen his sats are staying in a good range.

His second surgery WAS moved up. Originally we had been told August and he was doing so well, they bumped us to Sept. We had tentatively scheduled for 9/23 but that's been changed to Sept. 11. We'll be pre-admitted on 9/10. Recovery is expected to be 7-10 days.

Thank you all for your prayers for our family!

August 20, 2008 - post cath

Seth came out of the cath relatively okay. Dr. Carl said that he found things as expected, no surprises. The narrowing of his aorta was improved from a pressure of 30 to a pressure of 15. He had some "collaterals" (extra veins that are growing) and some narrowing of his pulmonary aorta. These are things that can be fixed at a later date or during surgery.

He had a rough day today. Coming off the sedation was hard for little Seth, he wasn't really himself and his O2 sats have been much lower than usual. Currently he's on a nasal cannula with a "whiff" of oxygen. We're praying for GREAT improvement by tomorrow. If he continues to struggle with his sats, his next surgery will be moved up...

I'll post tomorrow as I hear more.

August 20, 2008

I apologize for not being better sending out updates.

Seth is doing amazingly well. He's now on Nutramigen (the plus about infrequent updates is you all missed the whole no breastmilk saga, lucky you guys! ). He gets it mixed at 26/cal per oz (normally 20 cal/oz) and he takes some by mouth and the rest by his g-tube.

Today he's having a heart cath done. He was pre admitted last night and they're doing the procedure right now. So far we know he has "coarctation of the aorta" (narrowing) and the cardiologist is going to attempt to balloon and dilate that.

We're praying & confident it wll go well. We hope to be home later today or tomorrow.Thank you SO much for continuing tolift up our family in prayer.

August 6, 2008

So, Seth is hanging out, weight wise, at 5.90 kilos (fluctuating between 5.91 and 5.88 or so.. today he was down on our scale.. just something else for me to stress out about!). Oh, that's about 13 lbs. (I almost forgot to add that!!). I'll try and get a pic posted soon (but don't hold your breath). He's SO sweet, his face is getting really round, he's got those "fluffy" Bonnett cheeks.. And his eyes.. oh, his sweet BIG eyes.. I was so sure they were going to be brown.. I know they are not going to be blue but I"m starting to think maybe green.. We'll see..

June 17, 2008

I was trying to come up with a clever heading for this and I just can't so I'm being boring and just sending out an update. Blah.

My sister is here from California. She was originally supposed to come for a week in May to help out. She came this week because my dad's wife planned a big bbq bash for his 60th birthday and a Father's day thing and Kari couldn't make two trips.

On the only positive self care note I can come up with (but it's a biggie), my Ob's office called in a Zoloft Rx for me. I'll pick it up (or have L pick it up) tomorrow. I have a counselors appt on Thursday of next week. Honestly I'm a freaking mess. I can't get anything done.. for many reasons but as much lack of focus as anything.. I did manage to do a few loads of laundry today (well two) but it was mostly because my kids are COMPLETELY out of clothes.

Seth is doing as well as can be expected. I think I already mentioned here that the ped. card. is very pleased with his progress and his weight gain. WE did take him in for a chest xray yesterday, only to be told he was fine.. I was worried about his breathing (which is always a little heavier than usual but seemed even more so yesterday).. So we can chalk that one up to mommy being paranoid.. (not that anyone minded). I worry about him all the time and can't even bring myself to think about August with out falling apart.. (and as I mentioned above, falling apart isn't all that unusual anyway)..

Okay, this has turned into a long stupid rambling post but I'm signing off now before it gets any worse..

May 24, 2008

As many of you know, we're HOME!! We've been home a week.

My PC is dead and I"m still figuring out my laptop..

We're doing well, the big kids (including Kayleigh) all adore Seth.. She wants to hold him all the time. He's a Sweet baby, very mellow unless he needs a diaper change, usually.We saw the pediatrician and the cardiologist this week. Seth is, as of Friday, up to 8 lbs and 21 1/2 inches. (Hee hee, at 8 weeks of age, he's still smaller than his brothers at birth!)

We are SO grateful for all the prayers and support we've received. I won't send regular updates but as we have changes, etc I'll try and keep you posted. If you feel so led, please continue to pray on feeding issues, Seth is currently on a g-tube, and we haven't been working with a bottle since we got home as we've just been settling in, but we'll pick it up..

If you 'd like to check him out, we had his pics taken before we were discharged from the hospital and he's now on the website.

The link:
http://www.our365.com/newbornportraits/babydetail.aspx?birthid=18f5e617-4c28-400e-9ccc-bd1235829ab5&babyid=4b7ec5e4-aa96-422f-97a7-4af595947425

Thank you so much for the blessing you have been in our lives! We are grateful that if we had to go through this, we at least got to do it with God, and the support of all of you!

March 31, 2008

Baby Seth update - Day 5

Some highlights:
Seth extubated HIMSELF on Saturday night. He was done w/the vent, thank you very much. The big positive of that being that I was able to hold him Saturday evening.

Seth's oxygen sats have been holding their own where the drs want them. Starting on Sunday, we've been able to hold him w/a nasal cannula (think oxygen tank, old person, little plastic things in their nose ).

With the nasal cannula, I've been able to NURSE Seth. We've been not hugely successful. He's latched on a bit and nursed like a champ briefly on Sunday evening but today (Monday), he didn't seem to know what to do when he got milk in his mouth.

The boys were able to get into the NICU briefly this am and meet Seth.

Current update:
At this point, genetic test results have not come in. Drs haven't addressed the issue but everyone else (nurses, visitors, etc) says Seth looks just fine and perfectly healthy and normal.

Surgery IS scheduled for tomorrow, Tues. April 1, starting at 8am. Leland and I spent as much time at the hospital today as we could and will be in at 6am to see Seth before surgery. Surgery should last about six hours. PLEASE, please pray for the drs, for a successful surgery and while we're at it, the biggest issue in recovery can be feeding issues so we could start praying on that too!

I will TRY to post an update tomorrow, or have one posted when he comes out of surgery..

February 29, 2008

Week 34


Yesterday was a GOOD day! Yay, God!! As you (who are local) know, the weather was BEAUTIFUL! Spring is coming!

We saw the pediatric cardiologist AND had an NST and fluid check yesterday. The fluid level has dropped back down again (YAY!) and was 31.45 (down from last week's 37, below 24 is "normal"). We passed the non stress test.

The pediatric cardiologist was as encouraging as they are given that Seth has HLHS. His pda (patent ductus arteriosis) is still open (good, good news! This is the duct that they'll keep open artificially after birth by using iv hormones so that he's stable for surgery). His aorta is "medium" sized. Large would be better, small would be worse. (Measured 2.85 scale is 1-5). One of my favorite parts was when the ped cardiologist (we were seeing a diff. dr. in the practice so first time w/this doc.) said "HE doesn't know anythings wrong with his heart". So far, that's all positive. Please keep praying. We have a growth ultrasound next week but won't see the cardiologist again until delivery.

January 18, 2008

(In January, Kayleigh and Cary were wrestling and at the end of it, Kayleigh had a broken leg!)

So, never a dull moment at our house! Although, am I the only person who finds it ironic that we've gotten Sean to age 10 (almost) and Cary to 6 and our not-even-2 yrs old baby girl is the first one to get a broken bone???? How does THAT work?

So we saw the ped cardiologist yesterday (Thursday), no changes on Seth's condition. The left side of his heart is still very small, the ductus that they're watching is still open. She said that she just needs to see us once more before delivery.

We see our ob next week and the following week start those non stress tests 2x/week (Can I just say how much I"m looking forward to THAT? NOT!).

As of about 1pm this afternoon, Kayleigh is sporting a BRIGHT pink cast on her left leg.. pretty much toes to thigh. I told her that all the stylin' girls want one! She seems to be getting a little more comfortable with her leg.. Yesterday she was army crawling across the house but after the cast, her knee is now bent and that seems to have confused her ability to move a bit! I"m sure she'll figure it out in a day or two!

I DO want to say how grateful we are for the outpouring of love & support we've received over the last few days. We are overwhelmed by the kindness in meal offers, and even the emails that I receive have brought a smile to our face. We are so appreciative of the kindnesses offered by so many of you!

So, I'll sign off now with the reminder that if you don't hear anything for awhile, No news is most likely good news!

Hugs!

December 12, 2007

Well, we saw the pediatric cardiologist today. We can add ANOTHER doctor and four week appts. to our schedule.. this was NOT good news. That's actually an understatement. I was EXPECTING good news and instead I got, and I quote, "this is probably the most serious condition". Lucky us, huh? (Actually for lots of reasons, we ARE blessed).

Baby Seth has Hypoplastic Left Heart Syndrome. I don't really understand all of it but will add a couple of links to the bottom of this email. Basically, the left side of the heart is very underdeveloped and is not able to pump the blood (to the lungs I think) (later learned that the left side of the heart pumps the oxygenated blood back to the body). This is a non-issue in-utero as there is a duct in the heart that is usually open until 24-48 hours after birth. Once that duct closes you run into real problems. We will have follow ups every 4 weeks w/the ped. cardiologist because occasionally (rarely) that duct can close in utero and those babies require emergency surgery at birth.

In most cases, baby gets hormones at birth to keep that duct open and surgery is done (the Norwood sano operation, you'll see it in one of the links) at 3-5 days of life. A second surgery is done at 6 months and then often a third surgery at 30lbs. This is a rare condition. Sacred Heart has had 6 patients with this in the last two years and of those only one (who was very small and apparently had another syndrome) hasn't survived.

We are optimistic. Still praying for a miracle of course and grateful to be in a community that is so well-equipped medically.

http://www.rch.org.au/cardiology/defects.cfmdoc_id=5096
http://www.pted.org/htms/hypoplasticleft1.php

Both of those links were provided to us by the doctor we saw this am. They pretty much cover the same info. We see the perinatologist tomorrow so we'll be able to see how baby Seth is growing. He WAS very active today which made the fetal echo a bit lengthy.. I see my ob a couple days after Christmas and we'll just keep going from here!!

Some history

In August of 2007, my husband and I found out we were expecting our fourth child. Surprise! At that time we had 2 boys, 9 & 5 and a girl, not yet two. We were shocked. Once we got over that shock we were thrilled. We believe babies are a blessing and we were excited to see what God would work in our lives... As usual, we had NO idea what was in store for us!

On October 2nd, we recieved the phone call I'll never forget. I was 12 weeks pregnant and had done some prenatal testing the week before, an ultrasound that measures the "nuchal transparency fold" at the back of the baby's neck. Our baby's measured abnormally. This, we were told, could be a sign of a number of chromsonal abnormalities. Through additional testing, what we eventually discovered was our baby was diagnosed with Hypoplastic Left Heart Syndrome (HLHS). In layman's terms, our son would be born with "half a heart" as the left ventricle never fully developed. Currently, this condition requires 3 surgeries, around birth, 5-6 months of age, 2- 3 years of age (at 30 lbs of weigh).

Our son, whom we named Seth, has had the first two surgeries. I'm posting some emails that I wrote during that time to fill in some history...